Video: The PACE trial: a short explanation, Graham McPhee

That video is absolutely brilliant. Not only does it strip away all the jargon so I can finally understand exactly why PACE was such a pile of crap, but watching it has increased my score from 35 to 40. I now plan to watch it another 12 times - my 'recovery' will be complete!

Graham said:
Then in the third I hope to 'encourage' folk to take a more active part in bringing the issues into public notice.
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Will you count it is as a success if people say they feel encouraged to take a more active part? No need to collect data on whether they actually do take a more active part, you will have made your point and can head of to the newspapers to trumpet your findings.

strategist said:
If a therapy is believed to treat an illness by changing the patient's illness beliefs, then one cannot base claims of efficacy on self reported health, because the therapy could merely be changing the patient's illness beliefs without having an effect on health.
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Of course you can, there was nothing wrong with the patient's health in the first place so there's no improvement to measure. Trying to measure it would just validate that there was something wrong in the first place, which is the belief we're trying to change. Why undermine our success? Changing the belief is all we ever wanted to do, it was the only thing that needed doing, and we did it!

Graham said:
Finally, the first time the patients arrive at the centres and are given tests, they have already navigated strange routes and dealt with unknown people. By the time of their last assessment, they are used to the journey and the people, so it has less of a bad effect on them.
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Unevidenced claims about the efficacy of Graded Travel Therapy? Do be careful @Graham ...
 
Graham said:
I think we forget that all patients had 4 or 5 sessions with a specialist, and we underestimate that effect. My experience is that most people just see the specialist for 20 minutes or so, get told they have CFS, and are passed on to the therapists. Even so, the relief of having a proper diagnosis after 3 years of worry must have a significant effect (3 years was the average wait for the PACE participants).

But in the PACE trial, the specialist also dealt with pain management and relief, sleep problems and depression if appropriate. Now having some stronger painkillers at night gave me a better night's sleep, with a knock on positive effect on my symptoms. So perhaps that was a factor in all the groups improving. The specialist also explained "boom and bust".

Finally, the first time the patients arrive at the centres and are given tests, they have already navigated strange routes and dealt with unknown people. By the time of their last assessment, they are used to the journey and the people, so it has less of a bad effect on them.

Really, they should have been tested at the start when everything was being set up, then again before having 4 or 5 sessions with the therapist, then again at the end. This last one should have been the baseline. If they then had the dozen or so sessions of CBT, GET, scaredy-pants pacing, or total neglect, followed by another test, that would have separated the two aspects of the treatment.
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just the basic validation with employer family and friends of having appointments at the hospital about ME made me feel a bit better about the situation
 
@Graham, your scale and numbers showing the cut offs at 65, and the 85 moving down to 60 is ambiguous - I think the latter seems to point at 55. Probably doesn't matter, the point is made clearly anyway.

Excellent video again, thank you. And I like your dig at the end.
 
Thanks @Graham
As usual, very clear.
"Yet we are told that this study is of top quality. Let's be honest, this is not a matter of opinion or a question of interpretation. It is wrong. Black and white. Clearly, scientific analysis and statistical techniques are skills that the supporters of CBT have yet to acquire."
wow!
 
Thanks @Andy : I've just been loading and checking the subtitles and came across it. There's a word I said to myself. I'm trying to find out if I can edit it in Youtube, whether I have to upload it all again, or whether simply to issue an apology underneath! I didn't think many people would be that quick off the mark.

@Graham, your scale and numbers showing the cut offs at 65, and the 85 moving down to 60 is ambiguous - I think the latter seems to point at 55. Probably doesn't matter, the point is made clearly anyway.
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Thank @Trish . It's a tricky one that I puzzled over. The scale only permits you to score multiples of 5, so strictly speaking the borders are correct and the green and blue rectangles cover the correct area. I decided in the end that people would listen to it and not bother too much about things like that - it is for those who find the usual analyses too heavy going.
 
Sorry to be nit-picky too, but there is an issue with the whole recovery cut-off thing that keeps being ignored. It seems to have become a bit of a meme this thing that you could enter the trial with a score of 65 and yet be recovered with a score of 60. It's just not true. The recovery criteria also required an improvement of 20 points to qualify as recovered (in addition to a 8 pt decrease on CFQ and no longer meeting Oxford criteria). I know it's a small thing, but the PACE authors will always have an advantage if that "flaw" keeps being used.

[Edit: Sorry for getting the details wrong - I'm seriously losing it!]
 
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Well, I did say it was the recovery target for that questionnaire.

In the third video I intend to cover the "four" criteria - three are questionnaires and one is a diagnosis from a doctor that can be over-ruled by a questionnaire.

They didn't require an improvement of 20 points in fact, nor did they demand an 8 point decrease in the CFQ. That was back in the early days before they changed everything.

They ended up with targets of a score of 60 or over for the sf-36 physical function, a score of 18 or less on the Likert version of the CFQ (which again can overlap with entry criteria, and which was obtained from a similar calculation of the average and standard deviation), a tick in the box that the patient feels much better or very much better, and a diagnosis from the specialist that the patient no longer suffers from CFS.

However, that diagnosis is overruled if the patient score 70 or more on the sf-36, OR scores less than 6 on the bimodal CFQ. In other words, if they no longer meet the entry criteria, the doctor's assessment is overruled. That would imply that all the patients who had a diagnosis of CFQ but were not eligible for the trial because their symptoms were not severe enough, would no longer be classified as having CFQ – a 100% success rate for the fifth group of patients with CFQ not mentioned in the trial of those who couldn't take part.
 
Lucibee said:
Sorry to be nit-picky too, but there is an issue with the whole recovery cut-off thing that keeps being ignored. It seems to have become a bit of a meme this thing that you could enter the trial with a score of 65 and yet be recovered with a score of 60. It's just not true. The recovery criteria also required an improvement of 20 points to qualify as recovered (in addition to a 8 pt decrease on CFQ and no longer meeting Oxford criteria). I know it's a small thing, but the PACE authors will always have an advantage if that "flaw" keeps being used.
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I can't see a requirement for a 20 point improvement in the recovery criteria.
There is a requirement to meet the Oxford criteria but even this has been modified so for some patients the are deemed not to meet the oxford criteria if they don't meet any of the trial entry criteria. So if either of the CFQ or Sf36 raises above the entry level they are considered not to have met the criteria. Also the term for the criteria is shortened and it could be a patient who says pain is now the major symptom not fatigue would be classed as not meeting the Oxford criteria.
 
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